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A plan to provide free access to a “miracle drug” for cancer until Pharmac funding kicks in has been blocked in a move cancer organisations are calling “gutting” and “deeply disappointing”.

The decision means some people diagnosed in the next two months will have to go on to less effective treatments, which will make them ineligible to receive the best treatment once it becomes available.

Health New Zealand Te Whatu Ora said it would not provide the treatment earlier as it would not be appropriate when wait lists are being assembled based on clinical need.

The Government is set to fund pembrolizumab, known as Keytruda, for five more cancers: head and neck, triple negative breast cancer, colorectal cancer, bladder cancer and Hodgkin lymphoma.

Keytruda has previously been hailed as a “miracle drug” by some users, including those who have had to pay $100,000 out of pocket or through medical insurance for treatment.

Pharmac funding for the five extra types of patients is due to start in October, but drug company Merck Sharp and Dohme New Zealand (MSD) has been working on an early access programme (EAP) so eligible patients can be referred by doctors to receive the medicine for free before then.

“The programme, which went live this week, allows medical oncologists/haematologists working in public and private settings to put forward eligible patients to receive pembrolizumab free of charge prior to listing on the Pharmaceutical Schedule,” wrote MSD’s oncology director Vanessa Gascoigne in a letter to Health NZ chief executive Margie Apa.

A similar EAP for lung cancer patients last year helped about 150 patients. This EAP was expected to help 20-30 patients.

“On Friday evening I was made aware of a teleconference of Health New Zealand oncologists convened today by Health New Zealand. I understand that on that call, oncologists were instructed not to put any of their patients on to the EAP,” Gascoigne wrote.

“My understanding is that the rationale given for this instruction is that Health New Zealand is developing a national implementation plan for the delivery of Pembrolizumab to more patients from 1 October and that this plan is not yet ready.”

Gascoigne raised concerns that patients diagnosed in the next two months may be started on less effective treatments, and that this could affect their eligibility to then receive Keytruda once funding was available.

She also noted treatment with Keytruda was less resource-intensive than current treatments as it required shorter infusion times and fewer appointments compared to chemotherapy.

Keytruda will be funded from October 1.

“We are told that some Health New Zealand oncology services across the country could deliver pembrolizumab now, despite the national plan not being ready for all areas,” she said.

“I would like to propose that instead of a blanket one-size-fits-all instruction from Health New Zealand’s national office, that medical oncologists/haematologists are empowered to put their patients forward on to the programme on a case-by-case basis.

“I hope that by highlighting this important issue a sensible solution which prioritises eligible cancer patients can be agreed upon.”

Bowel Cancer NZ spokeswoman Mary Bradley said the decision seemed “pretty crazy”.

“The bowel cancer community has just been waiting so long for any drugs to be funded,” she said, noting it had been more than 22 years since a drug had been funded for bowel cancers.

While there had been announcements of funding, nothing had yet come to fruition.

“I’m talking to patients who are saying, ‘That’s all very well and good, but that’s not going to help me now. I’m fighting bowel cancer now, there’s nothing there that’s going to help me’.”

Bradley said to find out the drug would be available earlier but Health NZ would not allow it was “really gutting”.

“We’re on the front line talking to patients and we can see the desperate need for this,” she said. “If you are talking to patients ... you would understand the huge need.

“It seems like a decision made by bureaucrats who don’t understand what it’s like for real patients fighting a very real battle.”

Bradley hoped the decision would be re-evaluated.

Breast Cancer Foundation chief executive Ah-leen Rayner said it was “deeply disappointing” for patients with triple negative breast cancer, the most aggressive type and the hardest to treat.

“The difference in being able to access Keytruda could actually make a significant difference in their survival.”

Rayner said patients would not be eligible for Keytruda if they had received a different cancer treatment already, which meant patients would be forced to choose between going on a less effective treatment, “or you can leave your cancer to run rampant over the next couple of months while you wait for it to be funded”.

Keytruda is a better treatment for triple negative breast cancer than available alternatives.

This was simply not an option for people with triple negative breast cancer, who needed immediate treatment to survive, she said.

“I can’t even begin to describe how significant the difference is for patients having access to Keytruda.”

Health NZ chief clinical officer Dr Richard Sullivan said they were not able to provide the treatment before October 1 to patients who were previously self-funding it through private providers, “despite the manufacturer undertaking to make it available at no cost”.

“Health NZ manages access to treatment for all patients based on clinical need, so it would not be appropriate to prioritise patients seeking an early transfer from private to public care,” he said.

“We will accept patients who may wish to transfer from private care on to these waiting lists to commence treatment from October 1.”

The rollout of access to the drug included expanding the capacity of cancer treatment centres, developing the appropriate protocols and procedures around safely administering a new medicine, and appropriately managing patient wait lists.

“From October 1, Pharmac is planning to fund pembrolizumab treatment in public hospitals for specific clinical indications. Pharmac is currently consulting on the clinical conditions for which pembrolizumab will be funded,” he said.

Health NZ will be accepting people on to waiting lists and prioritising access based on clinical need.

Labour’s health spokeswoman Dr Ayesha Verrall said she did not accept the health system wasn’t ready.

“It is used in treatment of eight cancers. For two, it would reduce workload on hospitals if introduced tomorrow,” she said.

Health Minister Dr Shane Reti. Photo / Ben Dickens

“Government needs to answer what will be different on October 1, versus August 1, that means these medicines can’t be given now.”

A spokeswoman for Health Minister Dr Shane Reti said he was looking forward to the implementation of the recent funding boost for Pharmac, which would provide greater access to cancer treatments and benefit thousands of families.

“Through that funding boost, Health New Zealand was allocated $38 million for the 2024/25 financial year to support the timely and effective delivery of these additional cancer treatments.

“The minister has been assured that Health New Zealand is working at pace alongside other agencies to make these treatments available to Kiwis as soon as possible.”

Melissa Nightingale is a Wellington-based reporter who covers crime, justice and news in the capital. She joined the Herald in 2016 and has worked as a journalist for 10 years.